Life Management

A couple of years ago I purchased a Jeep Wranglers. I've wanted a Jeep since before my kids were born but always felt I needed to have a responsible car. But after my mother died, I finally purchased my "dream" car. Unbeknownst to me with the purchase of my little red Jeep, I joined the Jeep "community"; a group that created a tradition of waving to one another as they pass each on opposite sides of the road. I now do the Jeep Wave.

It's fun to do the Jeep Wave as I come upon another Jeep driver but I am under no illusion that I am part of a community. I am waving to another person who has the same fondness for the Jeep brand. Being part of a community requires more from the individual than having similar tastes in cars.

I believe a community is a unified group of people who acknowledge a joint ownership and participation in society and quite frankly includes a physical component. What do I mean by that? Take FACEBOOK as an example. We can read about the loss of a loved one by one of our friends on FACEBOOK and offer our heartfelt condolences on the site but we can't take our friend's hand or give them a hug. We can't deliver a casserole or take their children for an evening while they get some rest after a trying day at the hospital. I believe one must be physically present from time-to-time in the lives of others to be a community.

Now before you get up in arms about my excluding FACEBOOK as a community, please know that I am a FACEBOOK fan. I have reconnected with high school friends, maintained connection with previous co-workers who have moved on to other jobs and shared pictures with family regularly on this ubiquitous tool. But my point is, FACEBOOK is a tool, a device to enable communication between people. Community doesn't reside in the virtual world.

As we discuss what it means to be part of a community and how we personally can shape our community in a positive way. We must first understand what it takes to create community and be clear on what we are willing to do to make it a place we want to live.

I come from a background where it is ones civic duty to be well informed and educated on the “issues” of the day. Growing up I would read the morning and afternoon newspaper as well as watch Walter Cronkite each evening on CBS. As I got older I tuned into PBS to watch The MacNeil/Lehrer Report and expanded my reading list to include various magazines like Time and NewsWeek. Today I read the Wall Street Journal, The New York Times, The Washington Post and the LA Times. Because Marty still wants to watch broadcast news, we will occasionally turn on CBS but since the whole Brian Williams fiasco I am turned off to television news.

In a real time crisis I turn on CNN understanding completely that 75% of what is being presented is hysteria driven speculation. It takes time to gather enough information to accurately and succinctly report on stories of mass killings, weather tragedies and airplane disappearances but I feel the need to be connected if only through TV. Now that I can get the BBC on cable I will turn to them during an international crisis like the terrorist attacks in France because that broadcast feels less breathless and dramatic.

One might say I am a News junkie but I suggest I am a Political Science junkie. While I do analyze and critic the process of delivering the news, I am more about the structure of how society governs and regulates itself. I watched in horror and in real pain as the Sandy Hook Murders were reported and was dismayed to see the process for a call to action turn to there is nothing we can do. Have we really become a nation whose government has been bought by the upper 1%?

I imagine you are wondering by now if I am going off on some kind of Occupy Wall Street rant. Stick with me as I bring it back to you and me. We are bombarded with information on every single tragedy on the planet minute-by-minute. Heck if there isn’t a real time tragedy happening, one is created. Coupled with the images of death and mayhem are the words of “subject matter experts” who tell us the only solutions involves obscene amounts of money or decisive action from our government both of which, we don’t control.

I have come to a place where I don’t buy it. I don’t buy the rhetoric I am being fed. I am part of the world but my community does not encompass all that is shown on TV, the Internet or in the print media. I do have influence over the community in which I live and work if I want to exercise it. I can’t touch the lives of the entire world’s population but I can make a difference in my neighborhood or town. I believe that if we do care for and nurture our communities, then we do make the world a better place.

The journey has been one of ups and downs since starting this blog. Footsteps was created as a tool to discuss living with and caring for aging parents. You were there at the beginning when I shared with you the challenge of "taking" the keys from Mom to my struggles with sadness after her death. Footsteps has helped me connect with kindred souls who were walking the same journey and I am grateful.

Over the last couple of months my thoughts have moved from the specifics of caring for aging parents to the how-tos of transitioning from one season of life to another. Over the course of my lifetime there have been multiple transition points. I transitioned from high school to college, from single life to married life and back again. One of the biggest transitions in my life was into motherhood and while I will always be a mother, I am no longer responsible for the day-to-day care of my children. I'm sure you could list a dozen more as could I but now I'm contemplating and reflecting on how to transition from one state of being to another in a positive and productive fashion without the fear and hesitation that sometimes surrounds change.

Due to the positive response to Footsteps, I have been thinking about how to build community. The virtual communities of Footsteps and Facebook have been a positive force in my life but I'm talking about face-to-face, multi-generational and multi-interest groups that have an emotional and physical effect on our lives. How do you meet people of similar interest? How do you care for those in our community who need help in a dignified way? How do I become part of a community that gives as much as it takes? How do we honor our differences and create a loving community based on understanding and respect?

Some people are Specialist I am a Generalist. I am jazzed when engaged in learning about and exploring new and different subjects and ideas. I won't stop blogging about my parents and their end of life journey but you will find I will be expanding the conversation to include how to transition to the next season of life. I want to explore how to embrace the life that you have and how to take advantages of the opportunities that are available to you. I hope you want to come along and see where it takes us.

On a side note, I really do want to hear your thoughts and ideas I also know leaving a comment is a little more cumbersome than in the past. The spammers were clogging the site with every conceivable advertisement for sunglasses, designer stuff and technology gimmick you could imagine. To keep them off, we had to add another layer of identification. Please don't let that keep you from engaging in the conversation!

Who made the world?Who made the swan, and the black bear?Who made the grasshopper?This grasshopper, I mean-the one who has flung herself out of the grass,the one who is eating sugar out of my hand,who is moving her jaws back and forth instead of up and down-who is gazing around with her enormous and complicated eyes.Now she lifts her pale forearms and thoroughly washer her face.Now she snaps her wings open, and floats away:I don't know exactly what a prayer is.I do know how to pay attention, how to fall downinto the grass, how to kneel down in the grass,how to be idle and blessed, how to stroll through the fields,which is what I have been doing all day.Tell me, what else should I have done?Doesn't everything die at last, and too soon?Tell me. what is it your plan to do with your one wild and precious life?

If you are lucky or have worked real hard, your home is a sanctuary and a safe place. It's the place where you can recharge and renew your energy before heading out into the world again. A lovely home with comfortable furnishing make the surroundings nice but the joy in a home comes from the people that you share it with.

The stress of my mother's end of life journey invaded the home Marty and I had created. Marty, as my mother would say, was a "real trooper". He did not complain or question my need to be with my mother during her end of life journey. Looking back on that period, it was a rocky time for the both of us.

I did not see how unhappy Marty was until he spoke up after another frantic call from down South asking me to return. Marty knew I had to go and wasn't trying to stop me but he wanted some recognition from me that I knew this was hard on him too. As we talked about his feeling I came to understand that is was painful for Marty to see me in pain and be unable to do anything alleviate it. I also began to see that it wasn't just my life "on hold" but that our life was on hold as I walked my mother's end of life journey with her.

Recently I was talking to a friend whose widowed mother was in crisis. She was sharing with me her difficulty at taking control of her mother's physical and financial world, her worry about finding the right kind of help to care for her and how to pay for it all. Our conversation was identical to the ones being held everyday by people whose parents are aging. As we talked I noticed her husband mentally withdraw from the conversation and eventually move away from us physically. I know this couple to be loving and supportive of one another but I could see how difficult our conversation was for my friend's spouse. Their whole life had become about caring for my friend's aging mother and he couldn't handle listening to the conversation one more time.

The pain of watching your mom or dad leave this world is not yours alone. The pain touches the people that care about you too. I encourage you to reach out to your significant other and acknowledge their love and support during this journey. You are not walking this journey alone and your spouse may need a physical and emotional embrace along the way too.

This August it will be two years since I headed out to Whitefish, Montana for Laura Munson's Writing Retreat. Montana is where I met Kristin Meekhof, a young women who was a fellow writer and now a friend. Over the past two years, Kristin has brought to life her book, A Widow's Guide to Healing: Gentle Support and Advice for the First Five Years. Kristin lost her husband to adrenal cancer in only seven weeks after the initial diagnoses. Kristin wrote this book to help guide women through the first five years of widowhood as they work to navigate the new realities of their life.

In addition to completing her book, Kristin has spent the last two years meeting with widows all around the world who have transformed their loss into something beautiful. Kristin's story is about transforming her loss into a book that will help other. I encourage you to pre-order a copy for any woman in your life that is going through this transition. The book will be released in paperback on November 3, 2015.

My father died of a stroke, a stroke that destroyed both hemispheres of his brain. How do I know this? The lead doctor of the Jacksonville Mayo Clinic medical team caring for my father told me. He sat down in a dimly lit consultation room with my mother and our family and meticulously and diligently reviewed my father's test results with us. The MRI showed clearly the results of the stroke and while the doctor's words were gentle and measured, he offered no hope. My father was gone. He advised us to remove the machines after the 72-hour state mandated waiting period was met. With stroke victims, if a miracle were going to happen, it would be in the first 72 hours.

Embarrassingly, I didn't understand that the moment my father was removed from the machines, he would cease breathing and his heart would stop. I asked if we could take my father home, thinking he would prefer to die at home. The doctor looked at me in confusion and bewilderment asking me if we could handle an ICU set up at home. My sister still teases me about the exchange between the doctor and me. I don't really think it was all that funny but our family has an offbeat sense of humor during stressful times. I share this little antidote as an example of how we may hear the words in a conversation but don't always understand their meaning.

Since we could not take Dad home, we waited at the hospital taking turns sitting by his bedside. Doctors of all disciplines came into check on my father but the Neurologist and his team had the most interaction with him. Each time they came into see him they conducted a physical exam. The Neurologist tested his motor system, sensory system and deep tendon reflexes. The process was the same each time as the doctor looked for a state of consciousness at any level. After one such exam, the Neurologist was recounting what he had learned while a nurse was beginning to change my father's IV. My father was a strong man and pulled up his arm as the nurse tried to insert the needle. The doctor saw the alarm on my face and said, "That's a brainstem reflex. It is involuntary." I said, "Oh" and continued our conversation.

To this day, I regret not stopping the conversation with the doctor and walking over to the bed to speak to my dad. A little voice in me says "what if?". Nothing changed in his condition from the moment he slid into a coma but I still regret not going to his side. Months after my father died my mother asked me if she should have waited longer than the 72-hour waiting period before removing life support, just to see what would happen. Mom was regretting her decision. If I had walked over to my father's bed or if Mom had waited a couple more days before removing life support, the outcome would have been no different. I know this but regret lingers for me as it did for my mother.

The end of life journey and the ultimate death of our parents are littered with what ifs and maybe I should haves. Somehow we believe leaving this world should be clean and quick but most of the time if we make it to old age, it is not. Regret in death as in life is normal. Try not to be consumed by what ifs or the maybe I should haves and embrace and accept the knowledge that you loved your parents and tried to do the best for them you could.

The other day I was talking with a friend who is struggling with making decision about care for his aging mother. His mom is no longer capable of living alone nor is she able to make financial decision for herself. I causally mentioned how difficult it is to walk the end of life journey with an aging parent. Later as I thought about our conversation, I wondered if my friend realized this was the path he was on and if I had been too forward in using that phrase.

I use the phrase "end of life journey" differently than hospice and the medical profession. For the medical world, the end of life journey is a period of active dying and is tied to a specific physical process. I define the end of life journey as the period of time after a life altering physical or mental event that changes the trajectory of life in the elderly. I will give you two examples. My father suffered a sudden death episode that only 15% of people survive. He lived three years after this event. My mother fell and broke her right ankle and left wrist. She lived four years after this fall. In both cases, no matter how hard they tried; they never resumed life as it was lived before their health crisis. My father spent the remaining years of his life in and out of the hospital and doctor's offices believing that it was only a matter of time before he would be on the golf course again.

Frankly, our entire family believed it was going to be just a "matter of time" before my father was back to "normal". We could not imagine him any other way. Because of my mother's personality, the family wasn't quite as convinced that she would return to her "previous life" but we never saw it as the beginning of her end of life journey.

It was only after they died that it became clear when their end of life journey began and that was also when the pangs of guilt began in me. I started with the "if, only" thoughts. If only I had been more patient, available or educated about the aging process, I could have been more supportive during this time. In retrospect three or four years didn't seem to be a long time to defer my life to my aging parent. But here's the fallacy to that kind of thinking. You don't know this is the end nor would you want to know. My parent's needed their dignity and independence for as long as they could maintain it. I supplied the amount of help and support they needed at the time, no more, no less. Mom and Dad didn't need me hovering around the periphery of their life on deathwatch.

I have come to think of ones end of life journey as the same as playing jazz music. Playing jazz with a group of musician requires each musician to be willing to improvise and at times spontaneously create a new riff. At other times you may repeat cycles of cord changes or maybe end up in a whole new direction you didn't anticipate. Sometimes the music is brilliant and at others not so brilliant. To me ones end of life journey is the same. The people who walk that journey with his or her parents must be willing to improvise, spontaneously create new riffs and even repeat cycles of behaviors. But in the end, leave the guilt at the door. A musician doesn't feel guilt if he or she didn't think of a particular riff at the time of a jazz sesson and neither should we.

Yesterday was the third anniversary of my mother's death. I listen as friends and acquaintances declare that it seems like "just yesterday" their mom or dad died even though years have passed and that they wake everyday missing their parents. Truthfully, that has not been my experience. Three years ago I sat next to my mom's bed at Hospice as she took her last breath and while I remember the silence of that room after her breathing ceased, the memories of hospitals and the bone weary fatigue of that time has faded. There are times that I think of my mother and father with love, affection and laughter but I don't pine for them or for the past.

At first I felt a bit guilty that I didn't feel the same way as my friends and contemporaries about my departed parents. Candidly, I thought maybe there was something wrong with my relationship with my parents or with me. But if the truth be told, it's my parent's fault. They raised me this way. I remember clearly, when Matthew was little and in bed with an earache at my parent's home, my dad admonishing me for fretting over him. I can still hear him say, "Christine, he's okay. He will be alright." His message was clear. Don't waste your energy on worry or sadness; as my mother would say, "Don't borrow trouble". They were people who lived in a world where you managed those things in life you could and then let everything else go.

On this anniversary of Mom's death, I am starting a new series. I'm sharing the lessons I learned while walking my mother's end of life journey with her. An intimacy exists between the two people that are on this journey that makes it unique to them alone. My journey with my mother was not identical to the one my sister and brother walked with her but because we are human we also shared a common experience. Over the next 10 weeks, I will share with you what I learned and may it help you feel less alone.

In my twenties, I experienced a period of great experimentation and wonder. Woodstock and dancing the night away at Studio 54 in an altered state of reality wasn't my world of 20. My life, my art was having fun through learning and observing. My days were spent figuring out how to love and nurture my children. I read books about child rearing and prepared meals that fed the small bodies of the two people I found most precious in the world. I consciously limited television viewing of my young ones to Mister Rogers and Sesame Street. We sat on the floor together and built Legos, had tea parties with dolls and played outside in the rain.

As a family we visited museums, parks and shared peanut butter and jelly sandwiches on the beach while watching the sun dip below the horizon. I took classes at the local University in Political Science and Literature and studied after the kids went to sleep at night. I worked outside the home off and on during this period in a couple of difference fields deciding what I did and didn't like about the world of business. I even found time to do yoga late at night with a PBS program called Lilias, Yoga and You.

But sometime in my early 30's a shift occurred. I cared deeply about my children and living a creative life but my actions became less about teaching, learning and nurturing and more about keeping the balls in the air. Life became SERIOUS. My children's education, my career and the act of putting a roof over our heads stopped feeling like an adventure.

Reviewing report cards became an earnest exercise in college planning. Job action plans and annual reviews were my focus instead of whether I liked the work or the people with whom I worked. Discussions of my generations ever shifting financial world of savings accounts (or lack thereof), 401Ks and retirement replaced discussion of political thought or who was funnier Animal or Statler and Waldorf of the Muppets. This evolution continued well into my 50s.

Don't get me wrong, there was laughter and fun but being energized about basic life experiences evaporated. Marveling about the chemistry behind baking a batch of Toll House Cookies gave way to the pressure of just getting it done. Amazingly another shift occurred when I turned 60. I find that I am once again energized by learning and watching life unfold. Joy at living life, being with friends and observing the world around me makes the world feel special. How? Take winter for example.

Snow blankets our region and biting cold temperatures force thoughtful preparation before heading outside. The tendency is to walk fast with your head down is re-enforce by temperature in the single digits. As I walked to the car, I stopped in wonderment. The sun was shining and yet, snow as light as the seeds from a dandelion blowball was falling. The new snow was lightly covering the old mounds of snow and sparkled like diamonds. As the wind caught the snow and swirled it through the air, the ice crystals reflected the light to create silver glitter. I was standing in a wind tunnel of glitter surrounded by sparkling diamonds. At that moment, I was astounded by the beauty around me and wanted to share the feeling and moment with everyone. 60 is the new 20 and I am grateful.